Experience with reactions to Remicade infusions

[fateful_one]

Hi - I just had my 2nd remicade treatment today, but I had a severe reaction to it. About 5 minutes into the infusion I had to call the nurse because I started to feel funny. Within 30 seconds I had turned bright red, temp went up to 100,counldn't breath, was really dizzy and almost puked. She gave me a high IV dose of Benadryl which allowed me to breath again and the reaction to stop, but it was very scary.

So, I am wondering how many people here have had a reaction? And what was your reaction like?

Would you continue to use Remicade if you had a severe reaction?

 

[Rob]

I had remicade an had a reaction
tho not like yours
mine just wostened my symptoms ie doubled it

if I had a reaction like yours I'd pull the pin imediatly
I stopped after 3 doses as it was makin things worse, but a breathing prob etc your dr should stop it straight away

also why was your nurse not with you? My nurse was always in the room no more than 6 feet away

 

[Pmkrier]

Same exact thing happened to me. It was my second infusion and I had an anaphylactic reactions minutes into it. Scariest thing ever! That was a long time ago. Bummer it had to happen hey?

 

[fateful_one]

did you stay on the remicade anyway?

Same exact thing happened to me. It was my second infusion and I had an anaphylactic reactions minutes into it. Scariest thing ever! That was a long time ago. Bummer it had to happen hey?

Did you continue with your remicade treatments after your reaction?

My nurse said that I could stay on it but just take Bendryl before hand. But, what if the Bendryl doesn't work?!?!?

 

[fateful_one]

hey

I had remicade an had a reaction
tho not like yours
mine just wostened my symptoms ie doubled it

if I had a reaction like yours I'd pull the pin imediatly
I stopped after 3 doses as it was makin things worse, but a breathing prob etc your dr should stop it straight away

also why was your nurse not with you? My nurse was always in the room no more than 6 feet away

Hey - thanks for the reply. I am really weary of ever trying Remicade again because I my reaction to it. Why push it ya know!?! I never want to experience that kind of situation ever again.

 

[Journey]

Very scary. Even in ICU/ER setting with immediate assistance, people can die from anaphylaxis or anaphylactoid reaction.
I always recommend to people to take any new medicines in a hospital.

 

[My Butt Hurts]

Were you able to finish the infusion?
Do you premedicate with Benadryl?
I have heard that they can avoid second reactions by slowing down the infusion, but it has not happened to me.

 

[fateful_one]

Were you able to finish the infusion?
Do you premedicate with Benadryl?
I have heard that they can avoid second reactions by slowing down the infusion, but it has not happened to me.

I didn't premedicate with the Bendryl this time since last time they only did it as a precaution and I hate the way it makes me feel. It is a strong IV dose.

I did finish the infusion after waiting for about 20 minutes for the reaction to subside. I was very nerous about continuing though. She started me back up slowly and increased the dip rate every few minutes. I did not have any more reactions.

I know an anaphalxic is severe and dangerous. I feel like if she waited only a few more seconds to give me the bendryl I would have passed out. She called my doc and told him that I had a reaction, but she didn't describe it to him. Shouldn't she have??

Anyway, the nurse infusing me is new, and has only been working at my doc's office for 4 weeks. She does seem like a total ditts. She even asked me if Crohn's was a life long thing! Of course it is, shouldn't she know that!?!

I plan on talking with my doc on May 5th, before taking another remicade treatment. I think I am just still very freaked out from the experience and looking for some reassurances.

 

[My Butt Hurts]

I take non-drowsy Claritin before mine every time now. I took Benadryl before the first infusion and it made me so sleepy. Maybe you could check with your doc to see if that's an option.

 

[Rose City]

I took benadryl and tylenol before mine because I don't get a reaction as severe as you, but I do get a little one and a sweet headache to boot. Perhaps next time pre-medicate and see if it helps.

Also, did your nurse not start you on a low dose and ratchet it up to start with? Because that is how it is supposed to be administered. The way you explained it it sounds like she only did that after you had a reaction, which would definitely not help things if that is the case.

I think they start me at like 5 mg/kg/hr and keep increasing to like 250 mg/kg/hr.

In fact, at the UW in Seattle where I get my infusions it's standard practice and heavily suggested to have benadryl and tylenol before the infusions because it's a chimeric biologic.

 

[AussieKate]

Hi mate
I tried and failed on Remicade, but they always gave me pherergan beforehand to stop any kind of allergic reaction from happening. Although the first time they overdosed me with the phenergan, and gave me 4 times the recommended dose which made my bp plummet and feel very very faint so that in itself was really scary. I'd be very cautious taking it again, but as always its best to speak to your doc. Good luck, hope it was just a one off thing

 

[fateful_one]

Update and looking for more feedback

Thanks for the feedback everybody! I really love getting advice from you all. It is nice to know that I am not all alone

so, I talked with my gastro and he says that I can NEVER have Remicade again. The result could be anaphlaxic shock or worse. I am not too surprised, but very relieved in a way because I would hate to have that experience again.

He also told me that my Crohn's is now located in both my small intestine AND right colon, which really freaks me out!:eek2:

However, even more pressing is my current dilema:

I can't take Humira or Remicade and the doc says there is only two things left. Cimzia and surgery. I am scared of taking the Cimzia because of my reaction to Humira (lose ALL white blood cells) and my reaction to Remicade. I heard have that surgery can work for a period of time, but that once started down that road, I will be looking at more surgeries later on. Do any of you agree with that?

I plan on getting a second and maybe a third opinion about all of this.

Anyone have any suggestions for me?

I am currently flaring pretty good now, but even if I start Cimzia, I can't start for 2 weeks. Until then I am trying Entocort and pain meds to get me through. I am not having the D, just constipation, lots of mucus and a lot of pain in my lower rt, especially in my back. (I am assuming this is from the colon, as I have never had pain like this before).

 

[dreamintwilight]

It couldn't hurt to get other opinions if it will make you feel better. It might make the decision to get surgery an easier one for you if other docs think so too. Good luck!

 

[fateful_one]

another update

Okay, so I talked to the gastro today and he thinks I should try Remicade again!! He said that he will be there to watch me AND he will pre-medicate me. He seems very confident that this will work. So, even though I think I am crazy - I am going to try it. The only alternative is Cimzia and I am not too crazy about that one. It is very new and I heard that it doesn't really work all that well anyway...

Geeze, I am getting sick of this crap already!

Thanks for the replys I'll repost later.

 

[Lydia]

I have read about some people having reactions like the one you describe and they still continue getting remicade. They just get it way way slower and with more pre-meds. I am really allergy prone so they give me a shot of cortizone and benedryl to prevent a reaction.

 

[SouthernCrohnie]

Hi - I just had my 2nd remicade treatment today, but I had a severe reaction to it. About 5 minutes into the infusion I had to call the nurse because I started to feel funny. Within 30 seconds I had turned bright red, temp went up to 100,counldn't breath, was really dizzy and almost puked. She gave me a high IV dose of Benadryl which allowed me to breath again and the reaction to stop, but it was very scary.

I just read your post and got tears in my eyes! This is exactly what happened to me. I was living in Tokyo, Japan and had been hospitalized for 6 weeks on a central line and received my first Remicade infusion during that time. I later returned for an overnight and my 2nd infusion. I was in a group room with about 6 little old ladies.

Looking back, the whole experience was rather comical since I was an American, 27 years old, and the hospital's first Crohn's case since it's pretty much unheard of in Japan- I was somewhat of a novelty among both patients and staff. Oh, and it was a University hospital where med students would participate in rounds so I often had a group poking me and discussing my case.

Anyway, 2nd infusion, I thought it was an anxiety attack or something and was too embarrassed to call the nurse. Then I noticed I was turning red as a tomato and felt like an elephant was sitting on my chest- could not breathe. A lady visiting her mother glanced over at me with a sudden look of horror, and made a circling gesture around her face indicating that there was something wrong with me. So then I absolutely realized something was terribly wrong. So I called the nurse and managed to tell her in Japanese to come quickly that something was wrong. (I'm laughing as I write this) She comes, panics, and then suddenly there is a whole team in there stopping the Remicade IV and giving me another drug to stop what ever was happening to me. And thus ended my Remicade days. LOL.

On the bright side, I may be a case in some Japanese medical journal!

 

[Crohn's 35]

Dont know how I missed this one.. I was was in terrible pain, went into the lymphatic glands in my arms and couldnt move my arms for excruciating pain. Then it went down into my foot where is was red and purple and swollen. Had to get crutches to walk and Percocets, 2 every 4 hours!! I never take that amount, just goes to show you how bad it was. They flew my husband home on a flight to get home asap! Never again would I go back. Tried the Humira and nothing didnt work, Cimzia is not here yet but gi thinks it wouldnt work either. WE all need to find something that works, trust me a shot every few weeks is better than popping pills. Good luck and keep us posted!

 

[fateful_one]

Alrighty....I had another remi treatment today. they premedicated w/ tylenol, steriods, benadryl, prevacid. they slowly increased the IV drip rate every 10 minutes. by the time they got me to 80, i had the reaction again! it wasn't as bad, but only because i grabbed the IV line and turned it off. my "nurse" and all other staff were gone...to where i don't know. i couldn't call to anyone for help, which really pissed me off. once i did get someone's attention and told them what happened, they gave me more benadryl an restarted the process all over again. once i got to a drip rate of 70, they left it there. it took 5.5 hrs to complete!

i am a bit sceptical of remi though because if i am having reactions like this, i must have anti-bodies to it. if i have anti-bodies that means the medicine will be quickly killed off by my immune system and thus not really work...

so, i am probably not going to take the remi anymore (my choice). i am going to a new gastro in 2 weeks to get a second opinion, at the least. i just don't think the office i go to is up to speed or even remotely competent. the doc is really great and smart, but the staff sucks so, so bad!

o'well. at least this thread might help some other crohnies experiencing this kind of situation

nicole

 

[saidinstouch]

The 2nd infusion is the one where you are most likely to experience a severe reaction if it is going to happen. Due to the nature of the protein, your body isn't going to throw a full on response to the first treatment because it hasn't experienced it yet. However, by the second infusion, your body now has antibodies to the remicade (if you are allergic to it) and will cause the exact reaction you experienced. Benadryl might have helped, but in reality the anti-histamines before the infusions are more to lessen the effect of a reaction if one should occur, rather than to completely prevent a reaction.

Your doctor was right to say you can never have it again. Luckily for you, cimzia and humira are both similar medications that are much safer (when discussing allergic reactions) and have the same mechanism of action. You should try one of those instead since they (most likely humira though) are the next step in treatment once remicade fails (which happens after a few years for most people anyway).

 

[mtritle]

Also please remember. If you tried Remicade and for any reason your doctor takes you off of it. Then a new doctor puts you on it, that both the new doctor and the infusion staff are 100% aware that you had it in the past. Unfortunately its one of those medications where if you stop it, your immune system can build up antigens against it in the future... increasing your chance of reaction greatly... Unfortunately I have Chronic Pancreatitis along with Chronic Ulcerative Colitis so my treatment options are very slim. I have tried just about every medication on the market, have been seen by well over 25 different specialists locally and around the states... There are days that I can only handle the Remicade at a rate of 20ml per hour... I am not allowed to do weekend or afternoon infusions because I have allergic reactions every time I get an infusion that my doctor has to be contacted for and medications adjusted... I've gone into anaphylactic shock three times so far in the past 6 months that each sent me to the ER-ICU... One which required me to stay for a week... I've spent the last 2 years mostly in a hospital bed fighting acute pancreatic flares... Unfortunately Remicade and me do not mix well and I am highly allergic to it, but it is the only medication on the market that puts me into at least partial remission... Talk to your GI or primary care doctor... My PCP subscribed a nebulizer and albuterol and I do a round of breathing treatment 30min before my Remicade infusion is to begin so my airways are as open as possible... Something I have found to be a TREMENDOUS help... It is what they give you (that, Benadryl, and Steroids) when you go to the ER with breathing problems in the first place... So why not open your lungs and have them ready to receive the Remicade in the first place? Anyway I hope that helps!